Thursday, September 19, 2013

While not entirely true, we did at least get some news. He was bronched this afternoon and did great. They removed some granulation tissue, fancy name for scar tissue, inside the trache site. Externally, the site looks great! Overall the doctor is wanting to go back and do some preliminary assessments that were not originally done. The reason for not doing them, was the fact that we went to Iowa and the dr there and Dr Rutter did not see it being needed at the time. Preston is still very swollen and they are not able to see the graft still. The assessment that is needing to be done is to check if he is having an internal allergic reaction to something. There is not always an outward sign of this and would just cause his airway to be swollen, from mild anaphylactic causing allergens. This assessment that is needing to be done is both an allergy test and then a biopsy of the stomach and esophagus.

To put everything straight, we have to come back in 6-8 weeks for a bronch check-up. Hopefully they can get his other tests coordinated to be done at the same time. If not, then we are going to wait until spring to come back and do the tests. This is for two reasons, one we want to enjoy the holidays and two we do not want to put him in any situations that will include lots of people so that he can get sick. So the bottom line is we wait, not the best news and not the worst.

On a side note, pumpkin ice cream at Graeter's is AMAZING! Coming back in 6-8 weeks may mean cinnamon or egg nog flavors! That is the bright ray of sunshine that makes the trip, can't get seasonal flavors anywhere else.

Thank you for all the kind words and for making this blog part of your day.

Wednesday, September 18, 2013

We had a great night dropping off Reid last night. We went on a long walk near my parent's pond with the boys and my folks and then did jammies getting ready for bed time. As soon as my mom mentioned brushing teeth, Reid ran upstairs like lightening and thats when we took off. Not a tear and I am so happy to leave knowing he is happy. Who knew brushing teeth could be such a great distraction. :) I can't wait to get home and spend one on one time with him Saturday night.

Today was an early start but we had a great flight. Always feel lucky when the flight isn't full and Preston scores his own seat. Preston is happy to be back with some of his favorite toys. The best of the day was getting to meet Miss Kaydence. Flashback: When we thought we were heading home at the beginning of August and got the crushing news we had to stay another week, I was certain it was for a reason. Just didn't know what it was at the time. Well, then I ran into Kelley who's 3 month old daughter was trached the day we met her at RMH (that same yucky day we found out we were staying another week). She noticed P's trach and struck up a conversation with me. I would have never met this incredible mom and new friend if we had been sent home. Gives me chills. I know God kept us here for this exact purpose. Kelley and Jonathan have been here for 5 long months and we have been so lucky to see them last week when I was here with P and now this week. And today I got to meet their adorable baby girl Kaydence and hold her. Talk about flashbacks when Preston was that age!!! I HATE that they are still here but its been a great chance to build our friendship. Tim and I realized early on in our 'having a trached child' journey there are few people who REALLY know what we go thru on a daily basis. They know! Spending the evening with them was great and our hubby's hit it off great.

We are headed to bed with much anticipation for tomorrow's bronch. I am not sure how I feel. Part of me feels like we are about to receive some incredible news that we need. He had required ZERO suctioning for the last 3 nights and maybe 3-4 times during the day. The best he has been since his reconstruction surgery. We is breathing so well thru his mouth. I would like to believe this is because his swelling has decreased dramatically and the meds we put him on a month ago are working beautifully. In my head, this is what I am believing to be true. Tomorrow we will know for sure. I had a few tears while showering last night just hoping and wishing for a small break with the news we receive tomorrow. I am tired. Not going to sugar coat it. Mentally I am fried. I find that when I get a good night sleep and run or walk in the morning, I can keep my emotions in check. When one of those don't happen, I am not able to handle this roller coaster of a journey as smoothly. SO, I am making sure I take care of ME. It sure helps to have Jess everyday to vent to and she totally gets every aspect of our journey. She is not just a home health nurse, she is my therapist. LOL Seriously, it really helps to have her and her support on a daily basis. Its such a conflicting feeling knowing that when Preston is decannulated, she will no longer be with us and I am not ready for that. But I am SO ready for decannulation. Looks like I have a dilemma! :/ I am believing everything will work out how it is supposed to. Soooooo, as we head into tomorrow not knowing what Dr Rutter is going to tell us, I am reminded that I do know we have a God who loves us unconditionally and has seen us thru the darkest days. He isn't going to let us down now when we have made it this far. Preston's O.R. time is 12 noon EST so 11am CST......please pray for him if you think of it during your busy day! I will be sure and update once we are out of recovery and P is settled.

Here are some pictures from today! Feels good to have had such a great day!

Monday, September 16, 2013

Preston is showing us so many signs that he is ready for this big trip! I am beyond proud of him! We hear him taking in breaths by mouth more than ever, eating everything with zero problems, drinking milk and water with no thickeners, and needing ZERO suctioning last night and minimal suctioning during the day. We are amazed this happened so fast for him. All I keep thinking is, 'I bet his swelling has gone down dramatically and things are going to be nice and open for Dr Rutter to get a good look at his airway to tell us what the next step is.' Right? I am so hopeful! I am questioning why I unpacked Friday. We are packed back up again for this week's trip. Having Tim come with me is a huge relief. This will be a trip that will be etched in our minds forever I am sure. Dr Rutter will bronch Preston Thursday morning and this will be the final bronch to determine Preston's future in regards to his airway. Will he be ready for the next step to decannulate? Will we need to wait it out depending on the swelling or lack there of? Can we start speaking valve trials? When will he want us to come back? There are so many unknowns and I am VERY anxious to hear what he has to say. We leave early Wed morning and fly to Indianapolis. We are renting a car and heading to Cincy where we will stay at the RMH. P will be bronched around lunch time on Thursday. 12noon is P's O.R. time. Then we head home Friday evening. Flight times were not ideal for this trip but we plan to spend some quality time alone with Preston and catch up with our RMH friends too! I am glad the weather is cool and we can see what Fall in a different city looks like. The nice part is Preston will not be inpatient for this trip so we can stay at RMH with P. A trip to Graeters is in order of course. :) We hit the jack pot and will get to experience Pumpkin Chocolate Chip Ice Cream. Tim is drooling! Reid will be with my folks the whole time. Tim and I are taking Reid out for a date with us on Saturday night for pizza and lots of quality time together. Us leaving has taking its toll on him. :( Hopefully we won't be returning to Cincy anytime soon after this trip but I am prepared for anything. I wish I felt that THANK YOU would cut it each time I blog to all of you. It never will. I just keep trying to make a difference when I can for others while we continue to receive so much love, help, and support from everyone around us. Looking forward to sharing news later this week!

Wednesday, September 11, 2013

I am happy to report we are back in Cincy, settled and spending our time at Hampton Inn. We have P's time for his O.R. visit tomorrow. 10:15am is when Preston will be bronched and his stint will be removed.HALLELUJAH! I am very eager to hear what they say after looking at him.......hoping his airway is much less swollen. We will be inpatient tomorrow night and hopefully be discharged on Friday. I was told to book a one way ticket so departure is yet to be determined. I will know by tomorrow evening hopefully. We scored a direct flight into Cincinnati to avoid car rental and a 100 mile drive like usual. We also had an empty flight so P got his own seat. The hospital has a great shuttle service that I used. It has been an easy traveling experience. Reid got to spend his whole day with Auntie Kim and then his Grandma Walker is taking him to Tim's 2nd soccer game this afternoon. I am so fortunate for a wonderful 2nd family who is helping us out in a major pinch! Grandpa Walker will spoil Reid tomorrow and then off he will go with my parents for the night and all day Friday. My mom and dad had plans to go to Will and Ava's ice cream social Thur night so Reid will get to go with them. That boy loves ice cream and will have fun playing at the school with his cousins. This wasn't the plan obviously for the week but it is coming together just fine. I MISS TIM! Did I say I MISS TIM? It sure is a whole different experience doing this solo. Strangers have been very nice offering to lend a hand. I am sure I look like a hot mess but I really do feel like I have everything under control. Just lots and lots of bags! Nice to know there are helpful people out there! Tim will be joining me next week for Preston's (already scheduled) follow up bronch. That will be the big meeting with his Dr to determine P's future with the goal of being trach free. And the best part is we already have a 'short stay' room at RMH booked. No hotel! Whoo hoo! I decided to leave the pack n play at home so wish me luck on my first night having P join me. Lots of snuggling that I am looking forward to! :) I anticipate an uneventful update tomorrow from P's hospital room while he recovers. Thank you for your prayers! And for my hubby who is hopefully winning his 2nd game......GO STANGS GO!!!!!!! As Reid says, "Go go go go go!" We are working on the STANGS part! :)

Monday, September 9, 2013

Well, P has an infection that meds aren't kicking and he can't keep his feeds down with his stint still placed in his airway. Stint must come out asap! Sooooo, off to Cincinnati, a week earlier than planned, I go! Today has been one of the most stressful days I have had in a long time. A special thank you to Jessica Bartlett for helping hold the fort down while I spent the WHOLE day making calls and arranging everything to leave at a moments notice. Today would have not been possible without you friend! I appreciate YOU! No room at RMH which stinks but we will manage. Asking for a special prayer......due to this trip being so last minute, I am flying solo with my little man! I know everything will be great and I can do it! Any encouraging words are welcome LOL Just a big step for me on this journey! Also was advised to book a one way ticket because they won't know when we can come home until they see Preston's airway! I hate the unknown! If I am sick of this journey then I can only imagine how are friends and family feel. I just THANK YOU for not giving up on us and believing there is light at the end of this tunnel. Your love and support is what keeps us going on a daily basis!

Monday, September 2, 2013

Hard to believe we have been home for 3 weeks tomorrow! Time has slipped thru my fingers much quicker than I anticipated. I haven't had time to update the blog nor have I felt much to share. It was a HUGE transition for everyone the week following our home coming. YIKES! I was in a bit of a funk. From Preston biting Reid to Reid realizing he was no longer the KING of the house! Melt downs were in full force and Tim and I were wiped. Things have leveled out, we are in a great routine FINALLY. We attended church (my childhood church) for the 1st time as a family of four. It was awesome. Just wish the boys could go to the nursery but that day will come. They love the music and it was great seeing our friends. Preston now has a new feeding 'super mini size' backpack he can wear while getting his feeds. Its awesome. He looks SO CUTE wearing it.....its like a mini north face with a waste strap and everything. It may be cute and all but I am dreaming of the day we can stop giving Preston g-tube feeds so he can go back to eating by mouth. We leave in 2 weeks and 4 days for the stint to be removed from Preston's airway. This means no more g-tube feeds. I can't wait! I am nervous to make the trip without Tim........we asked my mom to come with me (so thankful she is available whenever I need her for times like these) so he wouldn't have to take so many days off work since he is making trip #2 the following week with me. Tim and I decided to have us fly into Indianapolis from now on instead of Louisville. It is a direct flight on Southwest so there is no plane changing which takes up a whole day to travel. Plus, the drive is much better. Its 100 miles to Cincinnati and we plan to rent a car again. My mom and I are excited for this adventure and of course we plan to make a pit stop to Graeters for their Fall flavor....PUMPKIN! Its sad when ice cream becomes a highlight of the trip. LOL On a serious note, I am relieved my mom will be going with me because she now suctions Preston and really helps with his trach care. Takes a lot of pressure off me when I am not with Tim. We will be staying in a 'short stay' room at RMH and already have it booked for both visits. GREAT NEWS! :) We fly in on the 18th and Preston will be inpatient on the 19th once the stint is removed for observation and the feeding team will consult with us regarding his next step to eating orally again. I am sure we will have to do honey thickner for liquids like last time. We will fly home the night of the 20th. Then Tim and I plan to fly back on the 24th for his bronch on the 25th. We will fly home late that night. That will be our 'big' trip in terms of hearing what the future holds for P once they see his airway after the stint has been out for almost a week. I would be lying if I said I don't think about this every day. I just want to know so badly when his time will be to sport a naked neck! :) I also think about how much will change for us and our daily life when that time comes and I honestly don't know if I am ready for that either. There are 4 scenarios the dr gave us that could be answers once they bronch him. I apologize if this all seems confusing. 1. His airway could look awesome. The stint did it's job by keeping his airway strong and open and the graft that they think is gone is no longer an issue (either way). His swelling (the big issue) has gone down significantly with the new meds he is taking to help with this. We could go home ready to work on a speaking valve and schedule our next trip to be bronched a month or 2 later. This is BEST case! I am remaining hopeful but being cautiously optimistic.....I just don't want to get my hopes too high and be crushed if this isn't the case. 2. His airway is no longer swollen (so they will be able to determine the outcome of the posterior graft) and if the graft didn't take and the stint didn't do what they needed it to do, the LTR surgery will have to be done again. I can't put into words how I feel about this. Totally sucks! But this time it will only be a single stage instead of double stage since the other graft looks great! This will take place around January or Feb. Just a guess.3. His airway is still swollen so they can't see if the graft took or not BUT the stint did it's job so now we have to wait out his swelling before we move forward with any plan to decannulate. 4. His airway is still swollen so they can't see if the graft took or not and the stint didn't do it's job so now we have to wait out his swelling before we can do anything. They need to see if the posterior graft 100% is gone or 100% took. They are taking aggressive measures to get his swelling to go down but Preston has an 'active larynx' which means he is prone to swelling instantly. This has been a surprise to all of us. We didn't realize this when he had his surgery. This isn't good when they want to see far down his airway. The dr said some kids take 1-4 years post LTR surgery until their airway is big enough and the swelling goes down for the trach to come out. I about fell on the floor when he said this. But he is being honest with us and giving us real examples of what the future 'could' hold for Preston and I appreciate that. Once Dr Rutter spelled out our options, I point blank asked him, 'I just need to know......will Preston ever be able to get his trach out?' and he said "OH YES! It just depends on how inconvenient it will be for him and us to see that happen but he will be decannulated." That was all I needed to hear. We are living life to the fullest. Preston is HAPPY and HEALTHY and we know what to expect on a day to day basis with his needs. We no longer let the nursing agency stress us out over shifts even though I think they are idiots 90% of the time. Sorry but I could write a book on that place. I have Jessica every day with me who I can't imagine life without. She has a bond with my boys that i cherish. I have Amy almost every night making sure Preston is safe so we can sleep soundly. We just oriented a fantastic new night nurse to fill in the gaps. When Preston doesn't have a night nurse, Tim sleeps in his room and we have that routine licked. Life is GOOD and if it means that Preston has to keep his trach for however long God sees he needs it, then that will be the way its supposed to be. Doesn't mean we aren't totally sick of lugging around his darn suction bag everywhere he goes or sick of paying for flights to Cincinnati and wondering when we can take a break from traveling. The boys are in full blown TURNING TWO mode and they are keeping me on my toes. I am more focused than ever on spending quality time with them each day. Our walks, trips to the park, playing in the back yard, pretending with food in their play kitchen, letting them brush my hair with their comb (lol), trips to the time out corner, telling me NO NO when I ask for them to say sorry, ....the list goes on and I cherish all of these because I know Kindergarden will be here in the blink of an eye and I only have one shot at shaping them and molding them the best I know how before they leave for school. I worry about speech delay with Preston and I try very hard to help him form words with his lips. Jessica is FANTASTIC with helping me recognize when he is saying words to us. I hope and pray the work we put in at home with him will pay off once he in 'catching up' mode after decannulation. Tim is in full coaching mode and I am really enjoying seeing that side of my husband again. I didn't realize how much I missed it until I saw how his cup is full again and he comes home so full of life and excitement after practice. I try hard to thank God every night when I go to bed for the GOOD things he has done for us and not dwell on the negative. By the time I start listing the things I am thankful for, I have fallen asleep. I would say that is a good sign that I am wiped enough to crash and not worried so much that I can't sleep.